the return of autumn and corona, i guess | Bi-Weekly Update

New book posts:

Other books I’ve been reading:

  • The Body Keeps the Score by Bessel A. van der Kolk
  • Paper Girls vol. 1 – 6 by Brian K. Vaughan
  • The Shadows Between Us by Tricia Levenseller
  • Through the Woods by Emily Carroll
  • When I Arrived at the Castle by Emily Carroll

Added to TBR:

  • Trail of Lightning by Rebecca Roanhorse (urban fantasy with anti-heroine)
  • Into the Drowning Deep by Mira Grant (horror with mermaids, f/f)
  • Merchants of Doubt by Oreskes and Conway (science, climate change)
  • Enchantée by Gita Trelease (set in Paris 1789, historical, witches)
  • Plain Bad Heroines by emily m. danforth, same as the author of “The Miseducation of Cameron Post” (horror, boarding all girls school, sapphic dark academia)
  • Toil & Trouble: 15 Tales of Women & Witchcraft (short stories, witches, queer characters)
  • Kingdom of Wicked by Kerri Maniscalco (young adult fantasy with witches)
  • Certain Dark Things by Silvia Moreno-Garcia, same author as Mexican Gothic which I would like to read as well (horror with vampires, set in Mexico City)

Three things on my mind:

  • Maybe rewatching two seasons of Hannibal in two days are not what you should do when you’ve been sick (with a sinus infection, not corona, I’ve done two tests) the whole week and only just gotten good enough to walk out of the house for food, but it did feel worth it at the time. I’m going to have to reconnect with the outside world and actual people again now, so wish me luck there.
  • I have since starting writing this rejoined society and I wasn’t aware of how much I was missing (of course my friends but more specifically) older students and the motivation they bring by just existing and being passionate about their degree or certain physics fields. This semester I’ve found myself constantly questioning why I’m doing this and not just taking a year off, because the constant struggle between hospital visits, bad health and trying to complete my second year during a pandemic is tearing me down. I feel I’ve reached some kind of personal conclusion now, but I do think we need to remind each other than no matter what one person is going through right now they’re also going through a pandemic. It’s difficult to support one another when we’re not supposed to socialize outside of friendgroups, but I think it’s something we need to find creative solutions for fast.
  • Speaking of it; Corona has made a comeback here this week. I’m so deeply tired of it, as we all are of course. We’re again stuck in the middle of not knowing how bad this outbreak is right now before it’s been another ten days or so. Motivation is sinking among the student body, or at least my friends. I have a whole lot of hospital appointments for chronic illness this fall and I’m worried that they’re going to be postponed, but at the same time I’m passed the point of worry for much of this. I’ve lived in such a heightened state of awareness as a young person in the risk group that I don’t know how I’m going to react this time around if (at least partly) lockdown happens, but it will definitely be different, because it’s become our new normal to such a degree.

Chronically Ill in University: Crohn’s Disease Awareness

I’ve tried to write this post many times, but the words just don’t look right together. I’ve already missed crohn’s disease awereness day two years in a row, so that says something about my qualms about writing this. But I think I’ve figured out what I want to say, or at least some of it.

Right now, today, my disease should be under control. You can live a normal life with crohn’s disease, they say. I was relieved when I got the diagnosis, because it only put words to something my body had been going through for so many years, so much time spent searching. And yet now, today, I am about to fail two out of five exams this semester. I am in the likely best university in my country studying physics, in my first year. And since before corona started I have been so ill, in various shapes, but of course I couldn’t figure out what was going on because everything shut down because of corona. (I also wasn’t allowed to get an actual corona test.)

Yet, going through so many years with people telling me that my pain, my disease, wasn’t real – that’s what I fall back on. That’s what’s in my head, trying to shame me into pushing through even though I know that’s not true. I know that now, I knew that then. Yet crohn’s is an often invisible illness, I’ve often looked my “best” right before collapsing or having to be admitted to the hospital or spending months bedridden in pain. I was complimented on how I’d lost weight, even as it was harder and harder to keep up in taekwondo class because spinning made me feel like I would faint and as I laid down on my stomach on the floor after push-ups, huge symmetrical blue and purple bruises would blossom on my hips and I had no idea why. I’ve made so many coping tactics, some good, some maybe not so, but I hate it when people critic them as if they know where I’m coming from.

I’ve made so much progress. And it more often than not feels like I regress again, every time I get sick with something new, or my crohn’s gets worse, but that’s not the right words to use. I don’t regress, because I’m not in control of it. And yet, it’s me that have to pick myself up again every time I lose muscle, everytime I have spent a month nearly dying, everytime I watch my brother go through the same fucking illness as me. And up ’til this point, there’s been little help to get compared to the criticism I’ve had to fight through.

Maybe I didn’t manage to figure out what was wrong and fix it in time for these last two exams. I did manage to pull myself together and focus enough that I completed the first three. It’s been a hell of a couple months. The only reason I’m hurting about ‘failing’ right now is that I’ve been in more pain before and still pulled through, but I now realize that I shouldn’t have had to. And with that ounce of compassion for myself I’m going to let that shame go, and not see this as a sign that I will never be able to do this. I will pull myself up again alone, this time as well. Eventually.

Say fuck you to everyone who expects you to have a completely normal life with this disease. ‘You can live a normal life with crohn’s disease’ does not mean you have to live up to that, it’s to not exclude possibilities when you feel most hopeless. And I will fight in any way I can again anyone else feeling as hopeless as I’ve been made to feel about my chronic illnesses.

I made this embroidery staying up too many nights trying to keep sane before my painkillers set in and the stomach pain withdrew enough to let me sleep. Here’s to hoping for a better and more energic summer than spring.